my famvir trial

I agree with heaps. The problem is with the whole scenario that we are stumbling around in the dark and when we find a torch , for the majority of us some mother has taken the batteries out. Hopefully we will all eventually find one with a full pack of new duracell !!

This Phase II clinical trial known by the acronym "FAST" (Fibromyalgia Antiviral Suppression Therapy) is for Fibromyalgia patients, and some qualifying ME/CFS patients. The study uses a combination of a NSAID medication and an antiviral medication (there are 3 types of each that work) to suppress herpes simplex virus (HSV-1), the proposed cause of Fibromyalgia and perhaps ME/CFS. Patients interested in getting in the clinical trial should have their doctors contact Dr. Pridgen directly at tsasurgery(at)gmail.com Here is a list of the 12 sites conducting the study.

Im just getting at that if we have viruses reactivating in us than we are probably immune suppressed, so more prone to other infections. Sinusitis can be caused by different things, yours seems to be allergy related. my sinus issues are bacterial related. My last blood test showed that i had moderate neutropenia and neutrophils are needed to fight bacterial infections. It could be just a cfs thing for low neutrophils but it may have been the valcyte causing neutropenia as my sinus problems have been mainly since i have been on valcyte. my doc has told me to increase my zinc intake to help with neutropenia. Im off valcyte now and get more blood work done in 3 months, so we will see how the neutropenia goes??

cheers!!

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Oh, sorry. I didn't realise bacteria all by itself w/o allergy could cause sinusitis. Once you said that I was going to suggest zinc tho and looks like you're on to that. I am finding that using zinc picolinate makes all the differemce to my allergies. Last year I was taking 75mg zinc and it was not enough to avoid misery. This year because I am using zinc picolinate 50mg seems enough to do the trick. This year I have been using the 9g/day omega-3 but also I cut out dairy as a huge source of omega-6 (fuel to produce inflammatory cytokines), however I also got the idea to substitute canned salmon for one meal. Ugh! It was TOO much! After I ate the salmon I smelled like fish for DAYs. So far I am taking 9g o-3 and skipping any day that it rains and I can manage w/o. I also have to take care to get enough protein. The zinc and the protein are just to rebuild muscous membranes destroyed by pollen as o-3 while TREMENDOUSLY helpful, is not perfect. I can't wait until June is over.

Has anyone had hyperglycemia as a famvir side effect? I just tested very high, and it explains weight loss, etc. No one on either side of my family has ever had diabetes, so I do not believe insulin production is the cause. Thank you.

I was having real problems with hypo-gylcemia prior to starting Famvir. I've been more stable in the blood sugar realm since starting it, but again, not sure if that's related to the drug or just normal fluctuation in the disease.

Just a quick update on my trial of thyroxine with Dr S. Now been just 3 months and I am up to 100mg a day and have seen no improvements. I am moving up to 125mg for 3 weeks , then 150mg for 4 weeks and 175 for 6 weeks then back to see him in November. Hope you are all keeping as well as possible and have found something (anything) that might help.

Has anyone had hyperglycemia as a famvir side effect? I just tested very high, and it explains weight loss, etc. No one on either side of my family has ever had diabetes, so I do not believe insulin production is the cause. Thank you.

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wow didn't know famvir did that. Since im on my way to diabetes Im glad I been taking it.

I have been on Acyclovir for 5 months since becoming ill, i stopped taking Acyclovir 400mg 3 x day & changed to Generic Famvir (Famtrex) 250mg 3 x a day within 2 days my sleep is dreadfull, I have been having 8 hours good sleep but now takes forever to get to sleep & feel so bad when I wake after 5 hours or so. Not sure if Acyclovir was helping keeping viruses (ebv, cmv) at bay ish or famvir reaction??

Off famvir & back on Acyclovir for now. Anyone had any sleep problems on famvir/Acyclovir

I have been on Acyclovir for 5 months since becoming ill, i stopped taking Acyclovir 400mg 3 x day & changed to Generic Famvir (Famtrex) 250mg 3 x a day within 2 days my sleep is dreadfull, I have been having 8 hours good sleep but now takes forever to get to sleep & feel so bad when I wake after 5 hours or so. Not sure if Acyclovir was helping keeping viruses (ebv, cmv) at bay ish or famvir reaction??

Off famvir & back on Acyclovir for now. Anyone had any sleep problems on famvir/Acyclovir

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Sounds like the famvir Is stirring something up. Maybe lower dose then stop. 250mg twice a day or even 125mg twice a day. Not uncommon to feel worse before getting better? ??

@clive powney Hey, Clive! I'm just starting Famvir and am wondering if you still take it, and how you are doing. Your weekly posts are very helpful and I like your "crappy, indifferent, better" scale. I hope to remember to use it as I begin my Famvir treatment. (So far I'd call day 1 a huge crap fest.)

@SDSue I am nolonger taking famvir sorry. Unfortunately for me it didn't seem to be the right route. Regarding the "crappy, indifferent, better" scale, I have found that extremely useful for myself and to put in front of a doctor. What I now do is, on a a4 year calendar, I mark a crappy day with a red highlighter, an indifferent day with blue and a better day with yellow. I also put a comment against a date when I change something. Then over the course of time you have a VERY easy visual aid of how your year has going and you can see if you are getting worse or better with a quick glance which is easily portrayed to someone else. I have been doing this for 2 years now and it is very simple and very helpful

Have u come across any helpful treatments since then or any more evidence of clues to whats happening like blood tests. I find the subsets of people is interesting, always good to pick up a few tips to pass along to others in a similar sub set.

@clive powney I'm sorry to hear Famvir didn't work for you, but I'm hoping you've found your magical potion and are out living life! I am going to implement your color coded system - it's a stroke of genius. Thanks so much.